Five Lies You Believe Blog Title

5 Lies About Disability

Synonyms for disability – unwell, unfit, poor shape, invalid, weakness, detriment, inexperience. I’ll be honest, I was heartbroken when I went to the thesaurus and looked it up. I knew it wouldn’t be GOOD things, but now I understand why sometimes society thinks less of people with disabilities. It’s in the definition. Now, I’m not saying create a new word for disability, because that’s going overboard. But I do want to share some lies you believe about people with disabilities – keeping in mind every disability is different and some experiences are different than mine, but many of us do get these all the time.

 

  1. I’m very smart, I can hear, and I can see. Just because I have a physical disability, doesn’t mean I have a hearing or visual impairment, mental disability or a learning disability. And just because someone has more than one type of disability doesn’t make them any less of a person. You don’t have to shout at me to get my attention, or ask my best friend what I want to eat, or talk to me in a condescending tone. I’ll know. And I’ll politely tell you that it’s not necessary. I’ve heard stories of deaf people asking for accessibility and getting a wheelchair. How does that help a deaf person?
  2. We do leave our houses. We do go out and have fun. I have plenty of going out stories that will rival any able-bodied person’s. Some of us have jobs. Although, the employment rate for people with disabilities is extremely low – I’ll write about that monster in another blog. We go on dates, we hang out with friends, go to bars, concerts, and do everything an able-bodied person does. Because we’re humans that have the same kind of interests.
  3. I am 27 years old. I like boys. Many people with disabilities are in relationships and plenty of us are not in relationships with other people with disabilities. I’ve dated both able-bodied men and men with disabilities. Both are valid choices, both can be great husbands (because my main goal is marriage and babies – ask my best friend… I have the worst case of baby fever) Yes, many of us can have children and are terrific, capable mothers and fathers. You don’t need to be able to stand in order to take care of children. (It’d be useful, but it’s not necessary). And no, none of my boyfriends had to take care of me. I’m an independent woman.
  4. I am independent. I can live on my own. I can cook, clean, do my laundry, dishes, and kill spiders. I can dress myself, take a shower and even get into my bed. I’m actually pretty good at sleeping. Yes, it’s nice for some help, but too much help squanders not only independence but confidence as well. I’m confident I can live on my own because I was allowed to be independent. I don’t second guess myself when I’m cooking (mac and cheese, cuz let’s face it – I shouldn’t be around fire and knives ever).

The biggest lie of all – I am not suffering from my disability. I don’t live despite my disability. I’m not chained to my wheelchair. I am free – because of my wheelchair – to live independently as any 27 year old would do. I don’t constantly fantasize about what it’d be like to walk. I don’t dream about walking, and it might be different based on the person, and I’m not saying if God performed a miracle I wouldn’t be blessed and thankful. I’m saying I’m comfortable with my disability, educating others about my disability, and life with a disability. There are plenty of us who have reached acceptance. I can’t miss what I’ve never had. I’m not unfit, weak, or invalid.

Words That Confine

Everyone has words they hate, or names they hate being called. As a person with a disability, there are words that are considered “hateful” and “not politically correct”. Each person with a disability has a different opinion to what they prefer. To me, “physically challenged” is offensive, however, “crippled” has no effect on me, but to a lot of people, it’s the worst. Here are some explanations for phrases and words common in our society that people with disabilities consider confine them to their disability.

 

Wheelchair-Bound: This one is the biggest NO. It’s just misleading. We can leave our wheelchairs. I don’t sleep in my wheelchair, I can sit on the couch, in a car, in a booth at a restaurant. We’re not tied to our wheelchairs. They’re simply used as legs.

 

Confined to a Wheelchair: see above. But also, would you like to be confined to anything? Are we prisoners?

 

Crippled: I don’t have a problem with it when used in the right context, but it can be used as in a derogatory way, and many of us aren’t frail as porcelain china as the word makes us sound.

 

Inspirational: This one is purely situational. There’s a difference between inspirational and inspiration porn. We draw inspiration from a lot of places. But if you’re making yourself feel good by doing something out of pity for a person with a disability (i.e. the prom proposals from “able bodied” teens to their “disabled” classmates) that’s inspiration porn. There’s a fine line and society loves inspiration porn. (This topic will be discussed at length in another post this month)

 

Special: What. Makes. Us. Special? Most of us just want to be treated equal. We’re no better or worse. We don’t poop rainbows and definitely don’t feel special most of the time when addressed as such.

 

Warrior: I’m not aiming this at parents of children with disabilities. But please, please, please think of your child when calling them this. You may think you’re helping their confidence and making them feel better. But many, many, many of my friends with disabilities think this does more harm than good and it was a common word brought up when asking what to write for this. . Yes, we experience a lot. But EVERY HUMAN experiences pain. Someone’s level 10 pain, could be our level 3 pain. It doesn’t mean that person’s level 10 pain isn’t valid.

 

Gimp: Another word I don’t mind hearing and I don’t hear often (except between my friends with disabilities) I guess it’s like the black community having names for each other. It’s not allowed by anyone other than a person with a disability. I don’t hear it often enough to have more of an opinion, there’s just a derogatory nature about it, and there are WAY better words.

The Great Straw Debate Blog title

The Great Straw Debate

Who knew in 2018 I’d be writing about my right to have a plastic straw? It’s a straw. I love my environment, animals, ocean – but I also believe we as humans have the right to fair, accessible accommodation. In today’s society, if it’s considered harmful, we must get rid of it all together. It’s simply untrue. We’re allowed to make our own decisions. As humans, we are made to be the ones who take care of the environment – and yes, some people will never care. But unless you are leaving ZERO polluting footprint on this Earth (nearly impossible) you shouldn’t be telling ANYONE how to pollute the Earth. That sounds silly, but it’s dang true.1

It’s been said that balloons are a bigger pollutant in our ocean than straws. So, why aren’t we getting rid of balloons? I’m allergic to balloons. They have no purpose to me. I’m not out there protesting the use of balloons. Just because a plastic straw can be easily replaced by you doesn’t mean that it can be replaced as easily by everyone. Please think about how it feels to be told the ONE thing that helps you feel the least bit independent is being banned.

Cell phones are killing bees, but if we got rid of cell phones no one would be able to survive because we are all so used to them. Yeah, it’s not always a good thing, but if you really want to start saving the environment, don’t use a cell phone. Or a tablet. Or a laptop. Start DOING something individually instead of tweeting about it, posting it on Facebook, and creating bans. Bans inhibit our freedom. Learn to be a responsible human. I’m sure something you did recently caused more pollution than a disabled person being able to eat through a plastic straw.

While I was in the hospital, flat on my back, I relied on plastic straws for protein shakes. I couldn’t lift my head so I needed a bendy straw. They gave me a large reusable silicone-tube-like straw and eventually I didn’t use them anymore because I couldn’t wash it myself. I’d drink my protein drink, put it in my water, still tasted like protein drink. That also meant that it was super dangerous for bacteria. Some people with disabilities cannot just go clean off their straw if they drop it on the ground. It isn’t a reasonable accomodation.

In the American with Disabilities Act, it states People with Disabilities have the right to “reasonable accommodation” and I bet for some PWD, they’d argue a plastic straw is a “reasonable accomodation”. By default, this means, the failure to accommodate a plastic straw CAN be against the law and therefore you could fight it in court. I’m not saying it will happen, but I’m saying you could probably fight it and win. A straw is like 5 cents. It’s definitely reasonable to keep in case someone needs one.

I’m not saying you can’t change to more eco-friendly straws in businesses, I’m saying have them around in case someone wants that reasonable accomodation. There are far better ways to help your environment. I don’t see a lot of people picking up the trash on the side of the highway. There were plenty of things in elementary school I learned to help the environment and none of them included banning straws, so why do it now?

I’m not saying our environment isn’t important, but as humans, we cannot make even one person feel like less of a human being by taking away their right to reasonable accommodation. You wouldn’t want to lose your basic rights, would you?

 

How to Concert ADA Style Blog Title

I Love Concert Season

Concerts. I love them. Don’t ask how many concerts I’ve attended, because the number does not exist. It’s a lot, and ever growing. It’s exhilarating. It’s social. It’s music. Music is proven to heal, increase your mood, and your lifespan. As with anything with a disability, it’s a little different – but I see it as an opportunity, not a barrier. I always accept the concert-going challenge.

 

The only thing I remember about my first concert was thinking to myself “I’m six years old, and I’m out past my bedtime. This is cool.” I know it was Rick Springfield (or Styx – no clue which came first) I don’t think I went to another concert until the summer between 7th and 8th grade. I went to a country music festival (that you couldn’t pay me to go to now) that started my love of music – and the concert life.

 

My first concert at an actual arena was Rascal Flatts (to this day still a total fangirl). I had no idea what to expect, so it totally threw me off when a radio DJ handed me a radio meet and greet. It feels like you just won a Golden Ticket every time that happens. My first meet and greet I know I tried to take Jay DeMarcus home as a pet. It’s the first of many hilarious encounters.

 

How do I concert? It depends. It depends on the venue, on the day, on the time, and on my people. Yes, my people. I have great concert-going friends. Over the years, we’ve learned what’s best for us and how to fight (respectfully) to make sure we all have a great experience. Not every experience can be absolutely perfect, but I can say I’ve never hated any concert experience. (There was this one time – but management made up for it – so it’s forgiven) We always make a game plan. Whether it’s making sure we have enough time to get there early, calling to make sure they know I’m going to be there, talking to security (I’ve had my own security guards on multiple occasions) – there is always a way to make sure I get a fair shot.

 

Ninety-nine percent of the concerts I go to are general admission. Meaning, the people in the front of the line will most likely be heading to the front row. (Or if you’re in Nashville, the good seats at the bar) Arriving a few hours ahead of time and line-sitting can be as much fun as the concert. I met most of my best friends waiting in a line. By most, I mean all but one of my friends – And I have the best friends in the world. To me, a concert is more of a social event than seeing the artist. I mean, meeting the artist is cool and it’s fun to reconnect a year or two later to realize how much has changed in that time, but to me, it’s more of catching up with friends that have that same feeling when they hear their favorite song live.

 

Some venues do let people with disabilities in first IF asked (or you have a connection inside) This is why you always make friends with security, managers, the band. I’M NOT SAYING ABUSE YOUR POWER. I will never ever, ever step over the line (I mean, I can’t step anyway) but use your resources. Don’t beg, plead, poor me. The most effective way to get in early is to say, “Hey, I don’t want to get trampled or hurt anyone else. Can I get a five second head start?” Works A LOT of the time. If I’m not there early enough, my friends and I will work our way to a spot I can see. It’s not always the front row. Sometimes it’s a balcony. Unless it’s The Rave and they tell me the balcony is accessible but there’s a STEP TO THE BALCONY. But The Rave and I have made up. We’re cool now. Their security is fantastic.

 

Not everyone in the crowd can see either. If you’re short, stuck behind a tall person it’s unfortunate, but you’re there for the music and as long as there’s a friend with you it’s all okay, because that’s what concerts are for… listening to music, and friendship. I don’t EXPECT special treatment just because I am in a wheelchair. I know I DO get it sometimes. // SHOUTOUT TO THE MAN WHO GAVE ME MAREN MORRIS MEET AND GREET LAST YEAR // I try not to get too used to it, because I don’t want to expect it, and demand more than equal. I’m entitled to an equal experience as an able-bodied person. Nothing more. I can’t expect water bottle service in the front row every concert. (Same Maren Morris concert – The Rave and I really made up)

 

I have also learned that there are just some venues I won’t deal with anymore. There are festivals I won’t attend because, while they’re “accessible”, they’re almost impossible without help, and they’re not worth the crowd, time, energy, money. Certain festivals are great (Summerfest, CMA Fest) others are muddy, and grassy, and rocky and gross. They’re just so much work, and they’re in the summer so they’re hot with no easy way out. But it’s okay, there’s always another concert. The ADA only covers basics – having a section that’s accessible, accessible ticketing (which I find is a benefit in instances where tickets are hard to come by),

 

There’s always another concert… says the person who went to a Dan + Shay concert every month for six months straight. But they’re the sweetest people, so I have no regrets. Guys, if you happen to read this – love you, mean it. Miss you, mean it. Since I’ve been sick for like a year – exaggeration – I have to remind myself that they’ll be back. Except for Justin Timberlake. I’m going to that concert even if it’s the last thing I do. You only see JT once. (Yes I’ve mentioned JT in like three blog posts, but I’m really serious about JT – also it’s gonna be May soon – so it’s prime JT season) I’ll enjoy that concert from the last row because at least I’m there. I’m there, and I’m alive and music makes me happy no matter how I enjoy it.

 

Grey's Anatomy & Media Bias Vs. People with Disabilities Blog Title

Grey’s Anatomy and Media’s Portrayal of Disability

I have Spina Bifida. It’s not a death sentence, I have a more severe form than a lot of people with Spina Bifida. In 1991, most women did not know they were having a baby with Spina Bifida, and when the baby was born, often doctors would recommend letting the baby die of infection from the open and exposed spinal cord. Now, not only can you find out the baby has Spina Bifida around halfway through pregnancy, many times fetal surgery is an option. It wasn’t an option until the late 90s/early 00s. Even with the option of fetal surgery or just having the baby, Around 70% of babies who are found to have Spina Bifida are aborted – and it’s normally the first thing that doctors recommend… in 2018.

 

Portrayal of Spina Bifida on TV is rare, but it’s happened twice on Grey’s Anatomy. Grey’s is my guilty pleasure even though it’s inaccurate, dramatic and EVERY REGULAR DIES. Back when Meredith and Derek adopted their daughter from Africa, she was said to have Spina Bifida with clubbed feet. Once they did the shunt surgery and her casts were off it may have been mentioned one more time, but that story line faded and she’s got no issues whatsoever. That doesn’t happen to ANY kid with Spina Bifida. If you watched the series starting now, you’d never know that even happened. I even had to go back to make sure it actually happened. I know, it’s a television show, plot holes are common, but it would’ve been nice to be represented at least a little

 

On a more recent episode, there was a mother who has tomophobia (Fear of surgery). That’s fine, it showed something real. This soon-to-be mother was pregnant with a child with Spina Bifida, and a candidate for fetal surgery to close the hole in the back to potentially lessen the severity of Spina Bifida. I have NO problem with this. It’s up to the mother whether they want to go through this OPTIONAL surgery. It may improve some movement, and allow them to walk (normally with braces). It’s the mother’s choice. It’s a great medical advancement.

 

However, the doctor in the episode seem to BULLY this poor mother-to-be into the surgery making it sound like it was the ONLY option for her baby’s survival. The mother is afraid of surgery, and you’re telling her the baby won’t have a good life without it. In a conversation with my own mother, she said it’s terrible that the doctor on the show felt the need to “play God” when the baby could be born and still live, but any time you go into a surgery, there’s a risk of losing the baby, or the mother, or both.

 

Beyond that, fetal surgery is SO NEW, those babies who first had it are just now turning into adults, and no one knows how fetal surgery affects you going into adulthood. I know a lot of people with Spina Bifida who can walk with braces, only to have to go full time to a wheelchair in their 20s/30s. So is prolonging the time to go to a wheelchair even fair to the child? I know if I were able to walk in the first place and to lose something I had, I probably would go into major depression. I’m okay with myself and my disability because I can’t miss something I never had.

 

Walking with braces HURTS too. I did when I was a child up until sixth grade. I went to physical therapy twice and week, and while I didn’t mind physical therapy that much, I HATED when I had to put on that brace and walk around. I fell so many times. It was great for my parents because they did get to see me stand up, and I’m not traumatized, but it wasn’t like I was always in my brace and it wasn’t a practical option for every day life. I don’t mind using a wheelchair… except when things are 10 feet high.

 

Children with Spina Bifida regardless of what level/severity are still likely to have hydrocephalus, need a shunt placement, and scoliosis and need back surgery to correct it. I almost died from complications of back surgery when I was 12. I’m still glad I had it. There are necessary surgeries, and unnecessary ones. Doctors will recommend a million of them to you, and it’s okay not to take them. If I was terrified of surgery I would not let a doctor tell me I need to have fetal surgery for my baby with Spina Bifida because there are plenty of us living great lives.

 

Doctors also shouldn’t go to patients homes and stalk them (yes, I know that was just for the drama of the show). They also should NEVER say your child will have a “better chance of normal” to scare an already scared mother into a surgery she doesn’t want. The patient checked herself out because she didn’t want it. That should’ve been the end of story. Instead, they continued to make it look like people with disabilities don’t have worthwhile lives.

 

My life is worthwhile – and I say this while I’ve been bed ridden for over six months. Six months out of my lifetime IS NOT HORRIBLE. It’s annoying, boring, a little depressing at times, but it’s temporary. You can get in a car accident and be in the hospital for a year. You can become disabled in an instant. The media SHOULD NOT be portraying disability as a burden, a lesser way of life, or depressing. I know able-bodied people who have way more depressing lives than I do. It’s perspective. My life is fulfilling and I don’t want to learn how to walk, because I’d have to relearn how to live.

 

Media controls our ENTIRE life and seeing disability portrayed negatively on one of the TOP SHOWS ON TELEVISION is so disheartening. It shows little progress to inclusion. It further tells society that we’re not worth it, we’re sickly, we’re not equal humans. Yet, 20% of our population is disabled. In such a “progressive” show, I expected more and had the mother agreed to fetal surgery, it’d be okay. But not the bullying a mother into it, because her child would’ve probably been just fine without it.

 

I hate the beach blog title

I Hate the Beach

I hate the beach.

 

Okay, that’s a lie. The beach can be beautiful and relaxing. It’s the dream destination we all have when there’s six feet of snow and the temperature is 100 degrees below zero. But, I really don’t like the beach. I don’t feel independent on the beach. I don’t feel that same free feeling many people feel and crave. When I was younger, I loved the beach. I don’t remember this, but I wrote a poem about how I hope to go back to the beach some day. (Thanks dad for reminding me that I actually do love the beach although I say I hate it)

 

Now, they have beach wheelchairs that you can use, and those are a great adaptation and I’ve used them, however, I still hate not being able to move myself in one of them. Beach wheelchairs have gigantic wheels to roll over the soft sand. I don’t know how many of you have tried to push a manual wheelchair through a bunch of sand, but it doesn’t work very well. And you absolutely CANNOT bring a power chair to the beach.

 

Low tide is actually my best friend. I can go out on a boardwalk and get onto the hard sand during low tide. My favorite thing to do when we would go to the beach with my grandparents would be to collect shells with my grandfather at low tide early in the morning. So, I guess I don’t hate the beach all that much. I mainly just hate sand, which WHO DOESN’T HATE SAND?

 

While there are plenty of accommodations that are made to assist people with disabilities at the beach, the TRAVELLING there is the hard part.

 

Airplanes

 

I went on vacation at the beginning of July… on an airplane… with no problems. Total shock when it came to I finally knew how to handle the airport. Normally, a person (who had made an accessibity request on their reservation) will have an assistant waiting for them at the front of the airport. I – for one – have had to track down a person every time I’ve flown. Or had airport workers do it for me. Because if you have never tried to carry or roll a 50 lb bag while pushing a manual chair, consider yourself lucky. It’s quite the trick. There’s no better feeling than to have your bags checked and not have to worry about them (you know, unless the airline loses them)  

 

I have a 20 pound manual chair. It’s – for the most part – compact. Depending on the customer service agent at the desk, the check in of the chair can be real long, or real simiple. At 4:30 AM, you kinda just want to fall asleep while they create all the tags and routing for it. (And if you have a layover… you get ALL the tags) Now, if you think THAT’S a long process, try going through the security checkpoint. Able-bodied people complain about the random searches. People in wheelchairs are full body searched EVERY. SINGLE. TIME. I mean, I’m definitely okay with it, because better safe than sorry, it’s just… adding an extra 20 minutes to my rush to the terminal for pre-boarding.

 

Oh yeah, that’s the best perk, always pre-boarding (provided I make it there in time) and almost always the first row seat (and sometimes I even spring for the window seat). The process getting into the plane, is the worst. It includes a lot of personal space invasion and a lot of I HAVE DONE THIS BEFORE LET ME TRANSFER MYSELF to an aisle chair that is skinny enough to get into the aisles of an airplane. Yeah, I’m pretty independent and I know they have to ask questions, but I’m verbal about “let me do it.”

 

As good as it is being the first one on the plane, it’s terrible having to be the last one off the plane. Especially with layovers of less than an hour in an airport you’re not very sure of… Case in point – Baltimore: I had 45 minutes to get from one end of the airport to the other. Literally the furthest gates away from each other. Thankfully, I made it. I didn’t get a snack and I was starving… but I made it.

 

Oh, and baggage claim is hard. I tried to get help in O’Hare one time grabbing my bag, and they told me the accessibility help was in terminal 2… when I had just left the “no re-entry beyond this point” area. So either I had to go through security again, or I had to figure it out for myself. Thankfully some kind strangers (who barely spoke English) were going the way to the bus terminal to catch a shuttle, so I was forever thankful for them toting my 50 lb bag an incredibly long way.

 

Trains

 

I LOVE train transportation. I would take a train everywhere if America was set up that way – but unfortunately, we’re not. Amtrak – how I love Amtrak. First, persons with disabilities get a discount if they stay in their chair (but 99% of the time, I get to transfer into a seat anyway because the train isn’t full)

 

Second, they have OUTLETS and most of the time FREE WI-FI. I hate being called a millennial, but I am 100% dependent on my phone and I admit it.

 

Plus, they have nothing but royal treatment for those with disabilities. Not that we should have BETTER treatment than anyone else, but it’s nice to be actually thought of sometimes, than “what do we do with the girl in the wheelchair” (how I feel when I ride a bus)

 

Okay, so you got to your destination, what about the place you’re staying?

 

Most of the time, I love hotel rooms. Many hotels are updating their ADA rooms to actually EXCEED expectations. One time, I cried because the bathroom had a bathtub AND  roll in shower with a hand-held shower head… and I didn’t even need to call to get a shower chair. Most of the time, when I call to get a shower chair, it takes about five maids to find one, and I don’t understand.

 

I take note of every detail in a hotel room that is or isn’t accessible. The last hotel room I was in, was actually pretty good – except they had a small round table that was blocking the bathroom door but was easy to move out of the way. The ice bucket was also at the top of the closet which made no sense to me. BUT IT HAD AUTOMATIC CURTAINS. So, that was cool. I might’ve played with that for 10 or 20 minutes. Maybe.

 

Part of adulthood is the traveling, and the independence you feel when you’re on vacation. That freeing feeling we all crave and miss when it’s over. The more we can

Are You a Bad Person for Not dating Someone in a wheelchair blog title

Are You a Bad Person For Not Dating a Person with a Disability?

The answer is short – no. What would make you a bad person is refusing to consider why you wouldn’t date someone in a wheelchair. If you’re just not attracted to the person, fine. That’s normal, I won’t shout ableism at you (although I never shout ableism – sometimes I think pulling the alarm on ableism does more harm than good – but that’s another topic for another time)

As a society, we seem to want to find some self-righteous human rights movement to join, help those “less fortunate” than us… and then continue about our selfish lives. It includes me, so don’t worry about it… it’s a human problem, not just an able bodied problem. I mean, worry about it because it causes hypocrisy among humankind – everyone’s a hypocrite sometime in their lives – and no, I’m not sorry for saying it.

I live in America, so I know how selfish, self-righteous and hateful we are. We hate the good, the bad and everything in between. It’s so easy to sound the whistle on someone who says something negative about a person with a disability. I’m not made of glass. I can handle someone not liking me. I have, and I’m sure I will again. The fact is, if you’re not attracted to a disabled person, it’s okay. As long as you treat that person like you would another able-bodied person. I would assume that’s with empathy and respect for the other person. Attractiveness is subjective, cultural and sometimes (a lot of times) superficial. Features, looks, personalities are different for a reason, and even I have a very superficial, specific type – bass fiddle guitar players with tattoos I mean wait… my grandma reads this – no one is exempt. We can try all we want to be fair, but life isn’t and neither is humankind.

For Valentine’s Day, I posted about a blind date gone wrong (link) – that scenario came to mind writing this, because I questioned if I was right to feel as hurt as I felt when I was rejected. The fact of that situation was he liked me before he saw that I was disabled AND I SAID I WAS DISABLED. He just ignored it until he saw it in real life. So there’s the difference. He liked me and then he judged me for physical reasons. IT’S OKAY. I dodged a bullet obviously.

Here’s where everyone can relate: NEVER be in a relationship because you think it’s right, or to spare someone’s feelings. In the end, it’s a toxic relationship. You mean well, but it does serious damage to self-esteem. It doesn’t matter age, gender, race, disability (and all the ones I missed) – it hurts no matter who you ask. Never stay in a relationship if you don’t want it, or it’s abusive, or you think you’re not good enough for someone else… chances are you’re too good for the one you’re with.

 

And that’s my two cents. Take it.

 

Six Months Update

Six Months

Six Months. It’s unbelievable it’s been that long in a hospital/rehabilitation setting. On one hand, it feels like just yesterday this started, and on another hand it feels like it has no end and I’ve been here my entire life. Since my first update, things have been a lot better. I’m off antibiotics for now. They’ll make a return before all of this is over. I’ve felt better, had more energy and the weather is finally turning into spring. I can see a light at the end of the tunnel, almost.

 

I’m going in for a flap surgery on June 4th, to close the wound. It was my worst case scenario situation, and since the wound does not seem to want to close any time soon and I WANT MY LIFE BACK, I opted for surgery. It was more than just an I’m Bored of This decision. The longer it’s open, the more it’s going to be infected. Currently, I have osteomyelitis in two parts of my sacral bones. The hardcore antibiotics will make a return after this intensive recovery.

 

I’ll be in the hospital for 3-4 weeks just chilling on bed rest after this surgery. I avoided this as long as I could, but there’s a few things this fall I need to do. I want to start 2019 off on a totally different level than I spent 2018. I have goals, and those goals are what keep me moving here.

 

I’m still tired all the time, not allowed to be up out of bed more than 2 hours a day (I’ve only broken that rule a few times) and the food still is terrible. But I will always talk about how much the people around me mean to me. My friends and family are the reasons why I’m still sane and not dying of starvation. I am really looking forward to have forward progress again.

Resurrection Weekend Blog Title

Resurrection Day

I took Resurrection Weekend seriously this year. I guess it can have different meanings for everyone, but to me it means, new life, new health, defeating death. Starting over is hard. It’s scary, it plays with your mind, it’s not convenient. The best part about a setback, is coming out of it the winner.

 

The day after I posted my story, anxiety hit me HARD. It made me physically sick almost to the point of having to go to the Emergency Room. I even asked the nurses to do the paperwork so I could go to the hospital. The Nurse Practitioner talked me down and I was eventually able to fall asleep. My grandparents arrived and made sure I was comfortable with a cold washcloth and a stuffed animal. I took a breath and my body seemed to restart itself. I was fighting fevers, and I haven’t had a fever in a few days. I couldn’t eat, and I ate A LOT Friday and today. I had my first home cooked meal today. It. Was. The. Best. (Thanks Grandma!)

 

Friday and Saturday were great days. Saturday I felt like a totally different person. I had two more doses of IV left, I ate a lot the day before, and I was wearing pretty lipstick. I’m a girl, pretty lipstick is my thing. I knew this weekend was a holiday and I was going to get out of the rehab for a little bit. So I felt better.

 

This morning my mother was going to shave my hair. But someone in the building who was working did it instead because they’re going to beauty school and wanted to practice. So she did. And I had 50 chances to turn back.

 

I never wanted to turn back. No matter how much my mother tried to talk me out of it. I buzzed it, and I love it SO much. It’s a reset. It is something I had control over. I had control over what to do with my hair. I don’t have much control about this infection beyond doing what the doctor asked of me and prayer. But I control who I wanted to cut my hair and how I wanted to have my hair. I can control the fact that my hair was sick and it needed to be gone to heal.

 

I am so excited about how it turned out, I want to keep it this way forever. I won’t. But it’s so nice to have one less thing to worry about while recovering. Any suggestions on headwear, let me know. I have a few saved in my cart on Amazon. I’ve received one donation of headwear, but I will never have enough scarves and hats for this summer. Most of the ones I have now will be too hot in summer. Direct me in the right places please.

 

From now on, I’m going to try to post one update a week. I’m off antibiotics, waiting on blood tests, and I see my surgeon at the end of April to talk about surgery. The price I pay for going to one of the best hospitals in the country is I have to wait three weeks to see a specialist. Thankfully, it’s not an emergency surgery. It’s an elective, even if I want it NOW. I’ll survive. I feel good today. It’s one day at a time. I’m praying for healing 99% of my day because I want this to heal faster than what the doctors say.

 

The encouragement from the last post was INCREDIBLE. I was so overwhelmed. I cried. But it was everything I needed. Thank y’all so much. I’m so thankful for such encouraging people in my life. I love each and every one of the people who reached out the past few days. It’s farm more than I ever imagined. Keep sharing the story though, because it might do someone some good. And that’s all I ever want with what’s happening to me. Be a little happy, even in times where it’s not the easiest thing to do in the situation. I’m still okay, I’ll be better soon. But for today I feel like I could conquer the world, and I live for these days. This is my Resurrection Weekend. My defeat of dying from this infection.

Where I Have Been

Back in November, I didn’t think my situation would be as lengthy or difficult or as absolutely mind numbing as it has proven itself. I developed sepsis in a pressure wound in my sacral area. I have no feeling from my waist down so I did not know I had it until it was way, way, way too late. I thought I had the flu for over a week until finally I agreed to go to Urgent Care and they told me to go to the ER. This was after they were about to send me home with an inhaler as a precaution for a respiratory virus although I tested negative for everything. The first lesson I learned that day is you know your body and doctors are supposed to work for YOUR health, don’t let the doctors tell you have something when you KNOW it’s not correct. Ask for more testing if needed, get a second opinion, go to the ER – because if I would’ve gone home that night I probably would have died, and that’s not even being dramatic. I wish I was being dramatic.

 

So after they admitted me into the hospital I spent three weeks in patient. I underwent surgery twice to clean out the wound I believe the first measurements were over 14 cm (Which means huge) and it was deep down to the bone – that’s important later. The plastic surgery team placed a wound vac, a very common treatment for a Stage 4 wound. (Google is your friend if you need more explanations on anything I’m talking about, that’s how I learned what was going on with me) I had two blood transfusions because they found I’m anemic. I’m now on iron to correct it. And I really don’t remember much of the hospital because I was still SO SICK. I do remember they had good food and made me protein shakes. One of the things I’m SUPPOSED to be doing is eating a lot of protein because your skin needs it to heal. We’ll get to what happened to food later.

 

I spent three weeks in the hospital. I got my first PICC line. The most traumatic event of this whole thing… and then they took it out and two months later I needed it again. I cried both times. Not just a little tear. I sobbed.

 

Once I was able to be admitted into a skilled nursing facility to get 24 hour nursing care, I felt okay. The wound continues to heal and each day I’m getting closer to some sort of health again. In February, I started getting feverish. They took blood (the first of many, many, many times) PS – Natalie, if you’re reading this. I’m very very sorry for the number times I’ll say the B word in this. The results showed MRSA, which is quite common in these places, however, you do need IV antibiotics for six weeks for treatment. So back to another PICC line. I’m still on that antibiotic for another three days. It’s been since beginning of February when they started me on Rocephin only to find out I’m very allergic to that medication. One night I itched my scalp for an hour with no relief. I finally had to sit on my hands at 2 AM. They finally switched to a different drug and an admiration time that wasn’t as insane as midnight. (Just 5 AM and 6 PM – 5 AM is hard) Midnight administration meant no sleep whatsoever.

 

This six week treatment of antibiotics has tested every single one of my limits, physical, emotional, mental, my patience… I wouldn’t have made it through without faith, friends, family. I have the BEST family and the BEST friends I didn’t ask for, but I’m sure glad I have them. From getting me out of here for a few hours (and almost breaking curfew) to sending me stuffed animals or junk food, and just texting or facetiming me to include me in everything going on at places and events I would normally attend. It’s the biggest comfort to me. I’m extremely blessed.

 

A lot of days aren’t good. But the good ones are GREAT days. I finally got into therapy and it’s helped retain some strength although I’m still very weak. Gaining even a pound is a win. It keeps from needing a feeding tube. Even though with the food at the facility being as terrible as it is, it sometimes sounds like a good option until I remember how a feeding tube works. It’s not fun. My grandparents show up with food sometimes and it’s the best thing that happens that day, because food = good mood. Today I’m in a terrible mood because the food choices were terrible. (Has anyone heard of just a plain chicken breast and putting ranch or BBQ sauce on the side? No? Just me?) They wonder why I don’t have enough protein in my system, but either the protein they provide isn’t enough, or it’s covered under unidentifiable substances that make me gag a lot. High gag reflex is part of my disability, and yes, I’ve tried so hard to correct it in 26 years. To the point that I threw up an onion after I was dared to eat a tiny little chopped piece. I still won the dollar from my big brother though!

 

I’ve already said I had a wound vac as a treatment early on, when I got MRSA, they took it off. I’m still unsure why, but they kept citing the infection. So they switched me to a regular dressing once a day. It’s easier, but it doesn’t seem to promote healing as fast. After 30 days of very stagnant healing, physical therapy started on diathermy to promote healing. I don’t mind it. It gives me the excuse to nap for half an hour during the day. It’s only the second week of this treatment and it has been recommended to go through a 30 day cycle. Still not mad about it. Still using it as an excuse for a nap. Honestly, I use healing my body as a reason for a nap. It’s a good reason.

 

The worst part of all of this has definitely been the toll it has taken on my skin and hair. It’s the most vain thing I could be worried about when my body can shut down from what’s happening in my body. I’ve always had really thick curly hair that has thinned so much and fallen out to the point of almost being able to count the number of hairs on my head. Another friend, Hannah, is sick and in bed like me, so we talk nonstop every day… unless one of us says they’re not up to talking to people that day – and it does happen, even when you feel socially deprived (I just wanna smell a guy who ISN’T treating me or related to me and visiting I’m 26 that’s not weird… is it?) I don’t even remember the point of what I was saying.

 

After four weeks of this infection I finally got in to see an infectious disease specialist to get his opinion, and an MRI to confirm I have osteomyelitis in two places in my sacral bones. So not only did I have a blood infection, I also have a bone infection. They won’t treat the osteomyelitis until the wound is closed because the treatment is very harsh and only want to treat me once for it. If the wound is open it’s always going to be susceptible to infection. I finally decided on surgery to close the wound. We’re finally to today. I’m still waiting to talk to my plastic surgeon about surgery, I slept three hours last night, I tried to eat, it’s nice outside and I don’t even feel well enough to go outside and enjoy it. I’m feeling new pain that I never felt (up to this point the pain has been nothing since I can’t feel where the location of the wound) It can be a sign of nerve regeneration, but that also means I may start feeling more pain especially the osteomyelitis.

 

I remember my point from two paragraphs ago. Hannah has to shave her head for surgery, so I’m going to do the same to regrow my hair. It’s going up on a Sunday… not a Tuesday… in my room… not a club. As scary as that decision was to make, now I just can’t wait for it to happen. I’m ready to not brush my hair anymore or think it looks so bad, or wash it. Once I’m back to health, I’ll let it grow out again. In the meantime, if you have suggestions for cute cap/scarf places let me know, because I’m not about to hide the fact I did this. I’ve already been called insane for doing it, but I think makes the MOST sense out of any of my blind decision making. Someone told me I’m an adult and this is what adults do. So, four year old me, you’re never going to call the infomercial number to buy ZooBooks when you’re 18, so stop saying you want to be an adult.

 

We’re good. I’m going to make it. I promise I am. I’m just really annoyed with the “I hope you get out soon” comments from well meaning friends and family, and I KNOW it’s my fault because I didn’t disclose this much publicly until just now. I’m doing it now not just for people. But for me. To see how LONG of a process this has been. And these are only the details I WANT to share. I’ll probably go back and elaborate in other blog posts or updates now that I’m finally gaining enough confidence and not worrying about feeling pitied.

 

I just want to be thought of instead of “Oh, she’s young, she’ll recover fast.” No, this is not a fast recovery. Once I TALK to a surgeon the surgery won’t be for most likely another two months. In the meantime I get to sit in a not very comfortable bed trying to reposition to NOT get another sore, in a small room with old people screaming down the hallway, and try to stomach a bite of their terrible food. (Again, I’m not the only resident here that complains about the food daily, the CNAs feel bad passing trays at least twice a week)

 

After surgery, it is required that I am in-patient for 3-4 weeks while I lie flat on my back, not moving in an air-flow bed; the worst bed out of all beds, but helps keep pressure off the wound/surgical site. It isn’t til after that 3-4 weeks I can start therapy, and sitting up starting for 15 minutes a day until it is increased all the way to a few hours. So I may be BACK in this same facility for a few months after surgery. It. Isn’t. A. Fast. Recovery. Yes, in the grand scheme of things a year is nothing, but we are NOT promised another day.

 

Things I’m looking forward to in the coming months because this has been a lot of negativity and I didn’t even touch half the points I wanted to make: God showing me my path of recovery did mean something to not only me, but other humans, being able to be in my chair for a longer period than a few hours without feeling guilty I broke the rule, a home-cooked meal (at this point Kraft Mac n Cheese is acceptable), no curfew that I need to be back before midnight, Justin Timberlake concert in September, Ed Sheeran in October and being home for Christmas next year, going back to Nashville because I miss it dearly and realized what great friends I left behind and how few I have in Wisconsin, to not have to worry about my hair for the rest of my healing process, and the most important one – to pet a dog. Somehow whenever there’s a dog visiting here I miss it by five minutes or I’m in a treatment. It’s a terrible chain of events.

 

Speaking of dogs, I blame a dog for my favorite song right now. I listen to the radio to make myself feel like I’m still part of the world, listening to people talk about events NOT in these four walls or worried about what my blood pressure or my temperature is today. My favorite song on the radio that makes me smile INSTANTLY is The Long Way – Brett Eldredge. Every. Single. Time. I smile. I think it’s because he has the cutest dog ever and I just picture the dog, but maybe it’s a little bit the sweetness and innocence of the lyrics, and maybe it’s because I’ve grown a liking to Brett Eldredge. Whatever it is, thanks Brett Eldredge for the endorphins multiple times a day (smiling releases endorphins, y’all) and by multiple times I day I mean every other hour because that song is reaching that #1 spot (hopefully) soon. Music is healing. There’s so much research that shows it makes you happy, and being happy makes you healthier and that makes your body want to heal more. That’s my scientific explanation for the day. But thanks, Brett… And I didn’t think I’d thank another Brett since Brett Favre winning the Super Bowl when I was a starry eyed kid.

 

I wanted to thank the people that have absolutely been the best the last few months when they didn’t have to be. Hannah I already mentioned,  Lisa, you get it. Because you were me once, and I made it through this with more positivity because I saw my best friend fight this and live to tell the tale. You are still my role model and I still am cheering you on with every battle every day. Taylor – who has always been the SWEETEST but brings food sometimes weekly but at least a couple times a month and she lives an hour away. Oh, and she helps me get out to concerts and make it back before midnight aka 11:59 and encourages my plotting to meet Justin Timberlake with her in September – it’s gonna happen. I didn’t want to turn into a pumpkin, after all. Natalie, you’re the only person I’ll ever FaceTime looking like a complete troll, and your friendship and keeping me in the loop with what’s happening in town makes me so happy. I really, really appreciate you so much.

 

My grandparents have been super great at stopping by to keep me company when they can, making sure I get to doctor’s appointments – I’m sorry grandpa that I made you walk all that way one time we got lost in Froedtert, and love you for still giving me a hard time even when I’m sick. Grandma I love you so much for all the prayer, unconditional love, supplying food that I’ll actually eat, and checking on me even when you’re so busy yourself. There are so many people I could sit here and thank. My mommy of course who talks to me 7 times a day at least. I’ve never talked to my mother more in my life. I’m just making sure she doesn’t have a panic attack daily. I love my mom. I do. I promise. Thank you EVERYONE who has sent me care packages full of M&Ms and stuffed animals. They’re my favorite things. Just, thank you so much.

 

If anyone has book recommendations, Netflix/Hulu/Amazon Prime recommendations, basically anything to recommend to pass time for the foreseeable future, leave a comment, send an email, send a Facebook/Instagram/Twitter private message… keep me entertained. This is the most I’ve been able to write in MONTHS. It takes a lot of physical and mental energy to write and think this much. I’ll try to continue with little events that happened over the course of five months, but I’m not going to force myself to write if I don’t want to write. I WANTED to share this. I WANT people to understand. It’s a COMMON problem with disability. This is just one story, but I feel it’s an important story.